Evan, 3 months

Alex, 3 months

Evan, 6 months

Alex, 6 months

Evan, 9 months

Alex, 9 months

Evan, 1 year

Alex, 1 year

Evan, 18 months

Alex, 18 months

Evan, 2 years

Evan, 3 years

Monday, June 20, 2016

At the end of this month we have a big ol' test and medical stuff
going on for our oldest with blood work and information that I am still
reading about and learning. Our doctor and our brain balance teachers
think E has an autoimmune disease going on called Pans/Pandas. Pediatric
Autoimmune Neuropsychiatric Disease Associated with Strep or other
bacteria and viruses. We would love your prayers as we start this journey and trying to find some answers.

Symptom presentation and severity can vary from child to child. It
can also vary in each exacerbation. Below is a list of possible symptoms
a child may exhibit. Not all need to be present. Not all possible
symptoms are listed.OCD (OBSESSIVE/COMPULSIVE DISORDER)
See OCD in a Young Child for a list of how OCD can present itself. OCD is not only obsessive hand washing!RESTRICTIVE EATING
This includes selective eating to full out food refusal.There
can a variety of reasons why the child experiences this, including
contamination fears, sensory sensitivities, trouble swallowing, fear of
vomiting or weight gain, and more. If restrictive eating is resulting in severe weight loss, call your provider immediately.TICSANXIETYEMOTIONAL LABILITY
Emotional lability includes not being able to control one’s emotional
response. It may include uncontrollable crying or laughing. This is a
neurological symptom.DEPRESSIONIRRITABILITY AND AGGRESSIONBEHAVIORAL REGRESSION
This includes baby talk.DEVELOPMENTAL REGRESSIONDETERIORATION IN SCHOOL PERFORMANCE
This includes deterioration in math skills, inability to concentrate,
difficulty retaining information, and school refusal. School performance
can also be a result of another contributing symptom, such as OCD or
severe separation anxiety.CHANGES IN HANDWRITING
This includes margin drifts and legibility.SENSORY SENSITIVITIES
This can include being sensitive to touch, sounds, and noise. Simple
touches may feel like they are hurting. One may not be able to stand the
way socks feel or the texture or temperature of certain foods. Sensory
processing problems can also cause difficulty in finding an item when it
is among a vast selection of items. For example, a child may have a
hard time finding a shirt in a full dresser or finding words in a word
search.SOMATIC SIGNS
This includes sleeping difficulties, enuresis, frequent urination, and bed wetting.HYPERACTIVITYSEVERE SEPARATION ANXIETYHALLUCINATIONS
This includes both visual and auditory hallucinations.FIGHT OR FLIGHT RESPONSEDILATED PUPILSURINARY PROBLEMS

Evan
has shown these symptoms in the last few years. I had NEVER heard of
Pans/Pandas. It wasn't until Brain Balance where he (we now know...was
having a "flair") was regressing, spitting, trying to head-butt people,
and was in constant fight or flight mode. It would get bad for about 1-3
weeks and then he would go about 10-12 weeks with no problems at all.
No dilated pupils, anxiety wasn't on edge. wasn't as emotional, etc. But
we were trying to figure out what was going on. This was different than
his "typical" diagnosis of Sensory Processing Disorder and Anxiety
Disorder. We were still missing something. Brain Balance asked their
supervisors what could be going on and they had asked if he had strep
recently....and he was diagnosed a few days before following up with us
on his behavior,etc. They suggested it was PANS or PANDAS (one is
associated more with strep and the other is more viruses/bacterias). We
started reading up on it. And we read some more and the more we read,
the more it "sounded" like E. We called and talked to our doctor and he
said he would get in contact with the infectious disease doctor here in
town who specialty is PANS/PANDAS.
We also knew something was
seriously going on when Evan ran away from school. :( He slipped through
a locked gate and went a mile away from school and crossed a 5 line
highway. Thankfully there were some store workers who brought him into
the store until the police arrived. So scary and his anxiety and flight
response have been getting worse as he gets older and that was the icing
on the cake for us. We made an appointment with the pans/pandas doctor
and next week we see him. I'm hoping this blood test will help give us
some answers on what is going on in Evan's body.

It's
scary when your child is sick and you don't know what is going on. It
reminds me when he was 2 and was hospitalized. I'm not sure if this is
when the "symptoms" started with this, if it is this autoimmune disease,
but this is around the time frame when we noticed a big change in Evan
with everything.

Today,
we've been noticing that E's behavior the last week has been reverting
back to huge anxiety stressors....like not wanting to go outside at all
because of seeing a bee. He hasn't been sleeping great lately and is
highly emotional and then impulsive. I had a feeling he was getting
sick. I took him to go get a strep test to see if it was positive. Alex
and I also got tested to see if we were carriers. Well...turns out mine
and Evan's were negative and Alex's was positive. This explains so much.
Alex has NO symptoms of being sick. No sore throat or anything. E
lately has been "off" and I'm guessing getting sick from Alex.

If
you don't mind could you pray for Evan. Pray that we find some answers
and get his body the treatment it needs. Pray that the blood test isn't
too traumatic for him on Tuesday.